Sunday, January 1, 2012

Hopes and Dreams for 2012

Happy New Years!
We are very optimistic about the new year.  There are several things we hope and dream will take place for Andrew this year.
  1. That we are able to find the resources to get him a special needs bed so that he may be able to have a safe and secure environment for him to sleep.  This would allow him and myself to finally get some rest and get him back sleeping in his own bed.  It is unsafe for him to be up without supervision throughout the night.  This bed would allow him to remain in a secure environment when he wakes up without adding additional stimulation to cause him to not fall back asleep.  This bed is not just for us to be able to sleep but also to make sure that he is safe during the night.
  2. We are diligently trying to get him the intense therapy services that he needs.  All of the doctors and specialists have told us that these services are vital for his development during these young years.  I feel as though we have already lost so much time since he is already 4 years old.  However, it's not too late.  These services are not covered by our private insurance because they are habilitative services.  Our insurance does not have to provide services based on current laws passed by legislation mandating these services be covered, because they are a local government self-funded plan.  We are currently exploring other avenues to gain these services and are hopeful for the upcoming year.
  3. It would also help our family to have some respite care services.  Andrew requires total care just like a small baby would.  The problem is, he is 47lbs and it takes a toll on my back and shoulders caring for him.  He is completely incontinent and unable to dress himself at all.  He requires assistance getting into the vehicle, in and out of the bath tub, restraining to calm him from a tantrum or removing him from a situation, and etc.  I have pulled and strained muscles many times caring for Andrew.  It would be very helpful to have a break once in awhile from these duties and be able to go outside the home to take care of other necessary duties.  During the summer and school breaks these services would be most beneficial.  I currently try to schedule everything around school since he attends 3 days per week now. 
  4. We hope to be able to visit Johns Hopkins Medicine Institute of Genetic Medicine at the Rare Chromosomal Disorder Clinic in Baltimore, MD.  These are the experts in United States on chromosome disorders.  Our geneticist has recommended, Matthew-my other son, be tested as well because of his learning disabilities and behavior.  Then if any abnormality shows on him, have my daughter tested as well for her future children.  Our insurance has denied any of the genetics testing and we later found out that it was a fluke that Andrew's was covered.  This would be important to find out and what the odds would be for her to have any children with an abnormality as well.  These tests would let us know if this genetically came from one or both of us, or if Andrew's situation is isolated and occurred spontaneously during development in the womb.  So, there are two ways this abnormality could have happened.  It could be because I or my husband has a rearrangement (this usually doesn't have any physical or developmental effects on the person) which puts you at a greater risk of having a child with a chromosomal abnormality.  The other would be if Andrew's deletion is completely isolated and occurred spontaneously during in utero development.  This knowledge would be very helpful for the future of our family.  Also, this clinic would be able to possibly pinpoint the exact genes that are missing and the amount.  This information could tell us a lot of what effects this deletion is having on Andrew.  We could also gain knowledge in any possible effects on him as his body grows and develops.  This would be important for us to know so that we may catch something early enough to correct it without any devastating effects of catching something too late.  We might even be able to gain knowledge into his future development and what to expect.  This would allow us to plan and make any changes necessary for him to have the care that he would need.  During this visit they would also address any current issues and concerns.  Andrew would be referred to other specialists as needed and be given a treatment plan that would benefit him the most.  Andrew's current doctors are in uncharted territory with him and are having to use the 'wait and see what happens' and the 'let's try this to see if it works' approach.  This knowledge would also allow his current doctors to better care for him.  Visiting Johns Hopkins is our best hope in gaining more knowledge to help Andrew and our family.  Please pray that opportunities are made way to allow us to make this journey.
  5. Service Dog for Andrew.  I've been doing research on service dogs, and it seems that this could have a great benefit for Andrew.  This would provide him with security, more independence, and safety benefits. This dog would not only be a great companion for him, but would also help calm him during times of distress,  be able to detect seizures, help with his sleep issues, trained to stay with him at all times, and Andrew could be attached to the dog with a lead and not be able to wander away.  There are two problems to getting a service dog for Andrew.  One his father doesn't like the idea of having a large breed dog in the house.  However, the benefits for Andrew will just have to outweigh that.  The other is cost.  These dogs cost the same as a nice used car.  They are in the thousands.  I'm looking into resources on being able to get a dog for him in the future. 
There are other equipment and things we are looking into for Andrew as he is getting bigger.  Please pray for us as we continue on this journey with Andrew and that we are able to provide these needs for him and our family.  We are grateful for those that support us through prayer and encouragement.

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